How do I express the emotions felt during multiple losses of our special babies at 8 weeks, 20 weeks, and then the shock of our surrogate losing twins at 8 weeks? All hope seemed lost. When I returned to my specialist, he said let’s try something new. He asked me to come see him as soon as I thought I was pregnant. A simple daily shot made our misery turn to pure joy. The roads were not easy, but the results were blessings because of three very special doctors. Dr. Blanco and Dr. Locke took care of me during both pregnancies, and Dr. Sanjay Patel took care of our two special gifts from God.
Reed Andrew Gilles was born on June 30, 2010. He was 6 weeks early and weighted 4 lbs. He was small, but perfect. Dr. Locke delivered Reed, and Dr. Patel was present with an ambulance ready if Reed needed transport to the NICU in Odessa. We both stayed in the hospital in Midland for 8 days. His temperature and small size were his only complications, so he did not need to transfer to the NICU. We took our tiny blessing home (dressed in double clothing for a month or so), and he thrived. We could not believe we finally had the child of our dreams. He is now a healthy, active, and very verbal three year old.
In January, 2012, I realized I was pregnant and called to see Dr. Blanco immediately. As I had before, he had me inject a blood thinning medication every day. But this pregnancy was very different. The shots helped, but again I began having issues and finally entered the hospital in Odessa on May 30 to postpone delivery as long as possible. Our baby was only 24 weeks, and the doctors expected to deliver the next day. We went to anti-partum at Odessa Regional Medical Center. The doctors and outstanding staff monitored our baby’s progress daily and helped us to give him a bit more time. After three weeks, our doctors felt our baby would have a better opportunity to survive in the NICU. He was not getting what he needed to thrive, and the situation was getting more serious. Ryder Daniel Gilles was born on June 15, 2012 at 27 weeks, weighing 1 lb. 9 oz. He was born breathing on his own and crying. Doctors were stunned. Danny’s wedding ring fit over his hand and looked huge. After four hours the staff intubated him, so that he would not have to work so hard to breathe. Those first four hours were easy and we were elated, but the next eight weeks would be a roller coaster ride, he was on a ventilator, had countless transfusions and multiple infections. He was fed through a tube, had daily labs to monitor his blood gases, chest x-rays, KUBs, survived in an incubator, took Surfactant to help his lungs function properly, and had a very scary incident. But he was also alive, fighting for life, and wonderful.
We visited daily and watched him grow stronger. At first we could not hold him as his skin was so thin. He held our finger, and we spent every possible minute talking and being close to him. There were some difficult times, but again we were blessed that he had the strength to endure and the wonderful staff to take care of our precious angel. Dr. Patel and the nurses took care of him and reassured us, his frightened parents. Eventually, he was having more and more good days, and we were thankful.
Dr. Patel and Dr. Ramos along with the outstanding nursing staff gave us daily updates concerning what Ryder was going through. Sometimes it was overwhelming and foreign information for all the adults. I cannot imagine going through the medications, procedures, and rough days without the support of the outstanding ORMC staff. We first held Ryder on July 21, when he was five weeks old. I still feel the elation of holding him for the first time. We began to be a little hopeful. When Ryder was 6 ½ weeks, I needed to go back to work. It was almost unbearable, but I had the complete confidence that he was getting the very best care available. The staff was much better trained to take care of him than I was. On August 22, we learned that Ryder had ROP – Retinopathy of Prematurity. There were no choices, without the surgery he would not be able to see.
On August 27, Ryder graduated to the Step Up NICU he was still on a feeding tube, apnea monitor and a Pulse OX. But he was growing, getting stronger and no longer in critical condition. They began to bottle feed him. Reed and my brothers’ families got to see baby Ryder through the window for the first time. We were overwhelmed to hear my 2 year old say that is my baby brother (Buda). We still call him Ryder Buda.
Taking him home in September was exciting and scary. He was still monitored by an apnea machine, pulse OX, and was tube fed if needed to get enough calories down. It was RSV season and our fears were heightened. In October we went to the hospital in Midland for a weekend when one of the machines indicated he was having trouble breathing. Colds, RSV and multiple stomach bugs came and went. Each month Ryder got bigger, stronger and life with two boys started resembling what we call normal chaos.
Today Ryder is a healthy, walking, babbling 18 month old. He continues to receive physical, occupational and speech therapy. He recently had his annual evaluation to review and assess his progress in order to identify necessary services for the next year. Ryder’s case worker was elated with his progress and feels confident Ryder will continue to grow and thrive with minimal delays.
We will forever be grateful and appreciative of the support and care we received at ORMC. We thank God for the years of research and innovations that March of Dimes has contributed to Reed, Ryder and all the pre-mature babies that benefit from individuals who devote their time and effort to help special, tiny and sick babies.
Marianne & Danny Gilles
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